Thursday, October 29, 2015

New IACC Formed: Robison and ASAN picked, Roger Kulp and Pro-cure autistics scorned.

I see that John Elder Robison is crowing about the new public members, himself included, who have been appointed to the IACC (Interagency Autism Coordinating Committee for those not in the know). This agency has both federal and public members who advise the government on autism policy and decide how tax dollars are allocated.  The CARES (formerly Combating Autism Act) act which requires an IACC has stipulated that at least one autistic (maybe more) be appointed as public members.  So far, at least five (maybe more) anti-cure autistics have been appointed as public members and zero pro-cure autistics.

The post states that three autistics have been appointed to the newly formed IACC.  Besides Robison, I don't know who the other two are.  ASAN's Samantha Crane who might be so severely autistic that she could only graduate from Harvard Law school and not get a job other than working for ASAN may be one of those.  She is described in the post as "an autistic self-advocate" so maybe she is one of the other two.  If Ms. Crane is geniunely autistic, that means she's the sixth anti-cure person on the spectrum to have been appointed to the IACC since its inception.

Roger Kulp, an autistic man whose autism has prevented him from going to college and working and has to live in poverty on SSI has expressed a desire to serve.  He apparently would like a cure for autism, since he's devoted a lot of his time researching cerebral folate deficiency and mitochondrial disease.  He has approached DAN doctors and has been a subject in studies of experimental treatments at the University of Arkansas with Jill James, Dan Rossignol and other doctors interested in metabolic forms of autism.  He's read a good deal of the literature on the subject of this specific type of autism and has a true interest in finding a way to help solve these problems which have made his life so difficult.  He went to special ed schools for a number of years and has had seizure disorders and other problems.  Roger can correct me if I've made any errors about his history.

I won't come out and endorse Roger since I don't even believe the IACC should exist, but if I were to endorse someone for that position it would be him hands down.  He's also expressed an interest in being a board member of Autism Speaks.  Neurodiversity complains so much about AS not having any board members on the spectrum, I'd think they'd be happy to endorse Roger.

Though I don't want the IACC to exist, and, in fact, I support complete repeal of the CARES act (which I know congress is never going to do), Roger's appointment as a public member would have been a real boost for our side.  It would have shown the government actually gives a shit about those of us on the autism spectrum who really feel we suffer from this affliction and want to use science to find ways to solve it or even cure it.

I know Alex Plank, Michael John Carley and other individuals have claimed that all or most autistics don't want a cure.  In fact, about fifteen years ago when I used to post on the autism usenet groups Tom Mckean and I were the only autistics that I knew of who publicly stated on the internet that we didn't like our autism and wanted a cure.  Over the years, the tide has turned somewhat and I'm encountering more people on the internet who state they're on the spectrum and would like a cure, so contrary to what Plank, Carley, and others may think, we're out there.

Roger has expressed interest in being an activist and giving his input to help others on the spectrum.  I wish him the best of luck in that endeavor as it's obvious the NIMH don't care about us and I'm wondering if Autism Speaks does either.

One bright side of this is that Matt Carey of the Left Brain Right Brain blog was not reappointed this year.  Also I'm glad to see Noah Britton is gone. 


Roger Kulp said...

Johnathan,I do wish you had told me about this blog entry before you went ahead and posted it.I don't know if I am ready to be the subject of a post in a blog read by people at NPR,Newsweek,and who knows where else.

I can tell you that I had heard from other autistic besides myself who had submitted formal applications to be on the IACC.These people were obviously turned down as well.It does seem a little suspicious that they chose the same old neurodiverse faces to represent people on the spectrum.New blood of any type would be nice,even if it were an antivaccine autistic like Jake Crosby.

Neurodiversity does not represent the entire spectrum.I believe it is the height of arrogance for those in the neurodiversity movement to claim to speak for those who are nonverbal or low functioning and say they do not want cures or treatments for their autism.I have said for quite a while that there is a need for more autistics to speak up and say they want cures and treatments for autism.Real treatments,not dangerous quackery like MMS (AKA industrial bleach)or lupron.I have thought for quite a while we need a "third way" movement based around seeing autism as a serious disability,with more negative aspects than positive.One that rejects both the neurodiverse and antivaccine mindsets.But I don't think we will be seeing that any time soon.The allure of the snake oil that is neurodiversity is too strong.

I am in no hurry to work with Kennedy-Krieger,if ever I can.I am still working out a way to be seen there as a new patient for a still unclassified,and very rare,genetic disorder I have just been found to have in the last few days,that may be the root cause of all my problems.All I have said is I have a very unique life experience,and would want to find a way to use this experience to help autism families in the real world the way I have in online groups in the real past nine years.

And it isn't Jill James.James does not see patients.I was the first autistic adult ever to be seen at Dr. Richard Frye's Autism Multispecialty Clinic at Arkansas Children's Hospital in September,2014.

jonathan said...

I apologize for not asking you in advance. I will delete the post if you want. My blog is not as widely read as you think. It is unlikely anyone with NPR or writing for newsweek will read it, though I have been on NPR and profiled in newsweek. I did not think you'd mind the publicity since you expressed an interest in being on the IACC.

John Robison said...

I agree Roger has a voice that should be heard, and I hope to have an opportunity to bring him to speak before IACC. I did nominate him, but outside of that I have no insight into who else was nominated or how the final members were chosen. Jonathan, I think your own view of "our side" and "their side" may blind you to what happens at IACC and what it takes to be effective.

The fact is, "cure" is not a topic of discussion in the world of autism science. The ways autism affects us are too many and varied to be addressed by that simple word. What we identify are the pressing problems to be addressed, to relieve disability in all the ways we find it, and to help autistic people have happy comfortable lives. Most of the IACC focus is on helping autistic people through medical research but there is some measure of advocacy for services as well.

You persist in calling me "anti cure" but the term has no meaning in the context of what we do at IACC. I constantly advocate for research to help people at all points on the autism spectrum. I advocate for research to help solve problems like wandering and self injurious behavior. I advocate for development of tools and therapies to help non verbal people communicate. Maybe you don't care about those things, but they are examples of work that will make life better for affected people one day.

jonathan said...

John Robison: Roger did tell me how you helped try to get him onto the IACC and I appreciate that so that is one good thing you did. The IACC was originally created out of the "combating autism act" which to mean means cure, even if Neurodiversity managed to get the name of the law changed. I don't know how familiar you are with the way the autism world of science worked prior to 2007 before you published your first book, but Autism Speak's predecessors NAAR and CAN's ultimate goal was to find a cure for autism. The name Cure Autism Now should tell you something. After they merged to form Autism Speaks, the new organization's ultimate stated goal was to cure autism. Aside from that, if what you are saying is true, all the more reason to repeal the CARES act if they have no interest in ultimately curing autism.

The context of the IACC is irrelevant. Ever since you published "Look Me in The Eye" you've consistently engaged in anti-cure rhetoric. In page 5 of your book, you said there was no need for a cure as we've discussed before. I'd be interested in how you'd solve the problems of self-injury and wandering behaviors without curing autism.

Roger Kulp said...

Hello John Elder Robison,

I am aware you nominated me.I am very grateful for all of the assistance you provided in both the nomination,and in preparing my resume.I do not know how the nomination process goes,but I am pretty sure a potential nominee would need more than one vote to be approved.

I would be delighted and honored to speak before the IACC.Would NIMH be willing to pay for my plane tickets,and a night in a hotel?

There has been a new development this week.I have gotten the results back from my Whole Exome Sequencing.It looks like I may have new type of disorder chromosome 11,possibly related to Ataxia-Telangiectasia Like Disorder,but very different.The only clinic for these diseases in the US is at Kennedy-Krieger.Interesting coincidence.I will be going out to Kennedy-Krieger sometime I don't know when.Maybe I could scheduleit the same time as the IACC meting?

spinoff said...

I pop here from time to time and I dare to comment on what I think is a faulse dilemma. Please forgive me for in the first place I write from Spain, I do not know well the scene over there, my english is rusty, and I am not autistic myself. I am an old man who has a severely afected son, he is a very kanner "syndromic" through extreme prematurity with numerous incidents of perinatakl near death. I am also what I call an oversemantic, very sociable, useless with instruments good a poetry and humour and often have problems with parents that have autistic sons for I think they are phenotypes and are very able seeing trees but not good at seeing the wood.
I think you are both right. On the one hand autism is a disorder which leads to problems and the neurodiversity lot seem at times to deny the great burden that befalls not only in the afected but on parents of autistic persons. But on the other hand, where have all the iniciatives lead that enphasize treatment, which at present are mostly dependent on behavoiur mod. and drugs?. They have led to disasters one after another and I have seen people tortured, made ill and die for the cause of treatment, a treatment that was pushed by teachers to hide their own failures and by parents seduced by this "new drug", that "new approach". And even if there was a treatment it might be that there would be a result similar to the blind man in Oliver Sacks book which recovers his eyesight and cannot make sense of what he sees, prefers to be blinfolded. The third way should be that of disability, which emphasizes rights, enablig and inclusion and does not forbid investigation if it is trulu so and for improving the lives of the afected as it is rarely done.